“Sunshine in My Soul,” Ensign, Aug. 1991, 16
There is sunshine in my soul today. It may seem surprising that I can say that, considering the challenges I face. My husband of more than fifty years has Alzheimer’s disease, and he has reached such an advanced stage of the illness that he requires the kind of care an infant does. I give him this care in our home by myself. Except for a few hours away during an afternoon or evening and a week or so of vacation each summer, I am home with him all of the time.
I have not always been at peace with this way of life. For me, adjusting to being the care-giver to a person with a long-term illness was similar to going through bereavement after a death; I experienced the same emotional stages of denial, self-blame, confusion, and bitterness. Several years passed before I reached the stage of acceptance and was able to say, “This is not the way Glenn and I would have chosen our lives to be, but it is the way they are.” Not until then did I try to find happiness in a different kind of life than in the one we had planned.
I have learned from my experience and from observing the experiences of other care-givers that there are ways to ease into the stage of acceptance and to make the task of caring for a chronically ill person less stressful and even enjoyable. I have also learned that whenever one door closes in life, other doors are always waiting to be opened.
1. Learn about the condition and the needed care of your patient. This helps you know whether to hope for improvement or to expect the condition to grow steadily worse. It can also help you be confident that you are giving the right kind of care. Twelve years ago, when my husband’s illness was diagnosed, very little was said or written about Alzheimer’s disease. In spite of the diagnosis of dying brain cells, I felt sure he could improve his memory if he would force himself to concentrate. We went through a frustrating and stressful time when I repeated words he could not remember and showed him over and over how to do things he could not comprehend.
Our friends have a son who was partially paralyzed in a surfing accident when he was just nineteen. Before they brought him home from the hospital, they spent time with him at a rehabilitation center. From films and demonstrations, they learned the nature of his injury and the best ways to care for his needs. They also learned how much recovery to expect and how to direct his rehabilitation.
Hospitals and government agencies sponsor workshops on the care of the elderly and the disabled. These workshops cover many physical aspects, such as baths and skin care, methods of lifting, and proper nutrition. They also deal with the emotional problems that both the patient and the care-giver often have to cope with, and they emphasize that patients who are mentally competent have a responsibility to do as much as possible for themselves and not impose on those who take care of them. Some workshops give helpful information about insurance problems and financial aid as well.
Government agencies and health organizations print reading materials about many kinds of illnesses; doctors and social workers can supply these materials. Check your local library for up-to-date books and magazine articles. The better you understand the condition of your patient and the ways to give the best possible care, the easier it will be to deal with your anxiety about the illness and with your feelings of inadequacy and frustration.
2. Seek comfort from people in circumstances similar to yours. Check to see if your area has a support group for families of chronically ill patients. In these groups you can often find sympathetic ears and understanding hearts, as well as helpful ideas.
The home health departments of hospitals and government agencies carry information about support groups. If a group does not exist in your area for the kind of problem you are dealing with, perhaps you could organize one, as a young couple of my acquaintance did.
Jim and Shirley were heartbroken over the birth of their brain-damaged son. After working their way through the first discouraging years, they wanted to share what they had learned, through study and by trial and error, with parents of other children who had learning disabilities. So they organized a group that meets regularly to hear suggestions from qualified speakers, to discuss their children’s progress, and to sympathize with disappointments and frustrations. The group is working to improve the local school for children in special education.
But even if you participate in a group of supportive friends, don’t overlook your source of greatest comfort. Shirley told me that in spite of all she has learned and continues to learn about teaching a handicapped child, her best help comes from listening to the Spirit of the Lord.
3. Develop interests besides caring for the invalid. You need to develop other interests so that you won’t feel you are “wasting your life,” as one woman put it, by being confined at home.
During the five-year vigil at the bedside of her terminally ill husband, Mary developed her talent for painting. She hired a neighbor to sit with her husband two evenings a week while she drove to the local college for art lessons. She set up her easel by a large window in her husband’s room, and he became her greatest admirer—and, she laughs, her severest critic. Now that he is gone, she fills many hours by painting and has even sold some of her work.
Perhaps you have a flair for writing but feel you need some instruction. Sign up for a class or a correspondence course. That’s what Bert did when he realized he was going to spend most of his retirement years taking care of a wife crippled by arthritis. He first wrote her life history and then his own, and now he writes a short philosophical column for a newspaper. He says his best ideas come from his wife, and some of the most enjoyable hours he has ever known are the ones he spends at the typewriter while she rests nearby.
Many people enjoy handicrafts. Relief Society miniclasses give ideas and instructions on many kinds of crafts—from tole painting to machine quilting—and community adult education classes give in-depth courses on a wide variety of handicrafts as well. You may find that you can build an interesting and profitable business at home with handicrafts.
It is never too late to begin developing your talents. I have always liked the philosophy expressed by the character in the poem “Ulysses,” by Alfred, Lord Tennyson. As the old man in the poem contemplates his life, he observes:
Though much is taken, much abides; and though
We are not now that strength which in the old days
Moved earth and heaven, that which we are, we are:
One equal temper of heroic hearts,
Made weak by time and fate, but strong in will
To strive, to seek, to find, and not to yield.
I thought of these lines as I watched a television broadcast showing Camilla Kimball taking an art lesson in her home—at age ninety-four. The door you open to your talent could bring you unexpected joy and fulfillment.
4. Take care of your health. Your patient should not be the only one under a doctor’s care. Have regular checkups so that your doctor can detect deficiencies in diet, exercise, or rest that can cause stress and even depression. When you are the only other one eating and your invalid is on a diet that is unpalatable to you, it may seem a great bother to cook for yourself. But no one needs the strength of a well-balanced diet more than a care-giver does. The hundreds of steps taken in the routine care of your patient might leave you too exhausted to want additional exercise, but I find a walk in the fresh air relaxing rather than tiring. The only way some care-givers can get enough rest is by training themselves to sleep whenever their patient does. These catnaps throughout the day and night are not an ideal way to rest, but many care-givers adjust to them just as parents of restless babies do.
It is also important to make time for yourself. The authors of a book on caring for the chronically ill write: “It is absolutely essential … that you have regular times to ‘get away’ from twenty-four-hour care of the chronically ill person. You must have some time to rest and be able to do some things just for yourself.” (Nancy L. Mace and Peter V. Rabins, M.D., The 36-Hour Day, Baltimore: The Johns Hopkins Univ. Press, 1981, p. 175.) You need to give your mind and emotions a chance to run in channels that do not include the sights and sounds of the sickroom.
So keep your membership in your service organization, social club, or choral group. Continue going to church and to the temple. Plan regular vacations. Of course, there is the problem of arranging for someone to stay with the patient while you are away. You may need to budget for sitters just as parents with young children do. The cost of professional nursing is prohibitive for me, so I give all the nursing care and take time away while my husband is sleeping and when I can hire sitters at an affordable fee. When I go on vacation, I hire a practical nurse to come in during the day, and family members donate their time at night.
5. Be independent. If it is your responsibility to be the main care-giver and you expect too much help from other people, it is likely that you will be disappointed. This can cause self-pity and bitterness—and even greater stress. Families generally will help in times of need, such as if you become ill or when you go on vacation. At other times they will telephone, visit, and invite you to go places. But they have their own lives to live and their own problems to solve. I like to think of my family’s help as a gift rather than an obligation. Most families try to be generous with gifts to their loved ones.
Church members will also give assistance when it is needed. When I broke my arm a few years ago, the Relief Society president arranged to have meals brought to us until I was able to cook again. I continually receive food, flowers, and offers of help from friends and neighbors. But all these people have jobs and families and problems of their own, and they can’t be at my home every day or week or month doing for me what I am able to do for myself. Nor do I want them to. Elder James E. Faust once said, “There is a divine purpose in the adversities we encounter every day. They prepare, they purge, they purify, and thus they bless.” (Ensign, May 1979, p. 59.) I want the blessings intended for me if I pass what may be one of the most important tests I will be given in this life.
At some point through the years, I crossed a threshold from merely accepting my husband’s illness to caring more about his comfort than I do about my own and enjoying doing for him what I would want someone to do for me. I now think less about what has been taken away and more about what remains: an earth that satisfies all my physical needs, a family who gives me love, a Father in Heaven who hears my prayers and sends His Spirit to light the way, and my faith that what has been taken will at some time be restored. All these bring sunshine to my soul.
My husband, Glenn C. Walters, died six months after I wrote the accompanying article. During the critical last weeks of his life and the difficult days after his passing, I received much love and assistance from family, friends, and Church members, as I had always known I would.
I was afraid that Glenn’s many years of dedicated leadership in the Explorer phase of Scouting had been forgotten. But some of the boys, men now with boys of their own, drove long distances to join the large group who honored their former leader at the funeral. A representative of the group paid tribute to their beloved “Walt,” and they all lined the sidewalk—some in the uniforms of Scoutmasters and others wearing Silver Beaver awards—and gave the Scout salute when the coffin was carried past. I was comforted by the assurance that my husband’s influence for good in hundreds of lives would live on through this and future generations.
I have often been asked why I did not put my husband in a nursing home after he became physically and mentally helpless. I was convinced that, as long as he needed no specialized kind of nursing, he would get better care from me than he would in even the best nursing facility. After I turned to the Lord for help, Glenn’s care was not a hardship for me. Through the Holy Ghost I received the guidance and strength I needed to meet the new challenges and added work that came almost daily. (See “Death of a Personality,” Ensign, June 1987, p. 62.)
The main reason I cared for my husband at home was that I wanted us to be together as we had been for fifty years. Most of the time he showed very little awareness of his surroundings and no emotion toward people. But sometimes when he looked straight at me or at one of our children, his eyes filled with tears and his throat tightened into a hard swallow. I felt that if these responses meant he experienced periods of clarity and awareness—no matter how fleeting they might be—l wanted him to see that the rooms around him were the familiar ones of his own home and that the person taking care of him was his wife. He died at home with loved ones at his bedside.
Several years ago a friend who was taking care of her invalid father asked me for some advice. I remember saying, “Don’t think of your task as a burden; think of it as an opportunity to learn what love really is.” Perhaps the Savior’s love for us is so bountiful because of the great service he gave to us. I know that these years of service deepened my love for my eternal companion.
I didn’t realize how completely I had organized my life around my husband’s care until he was gone. I was unprepared for the emptiness I feel now. Still, I have faith that after a time of healing, I will find new doors to open and will someday feel sunshine in my soul again.